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29 Sep 2015 11:07 | |
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If you are well with low fibrosis it would be sensible to wait and see. These meds will get onto the PBS eventually and hopefully everyone who wants access will be able to get access. I wish it was there now because for people at F4 time who have been refused compassionate access the clock is ticking. It's there when it's there and dealing with the demand will be a problem but I'm told GPs may be allowed to help which will be required to handle the numbers if the tap gets turned on. At the moment this is the best that can be done for those who need treatment now rather than later. Category: Australian PBS Listing |
29 Sep 2015 15:02 | |
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My advice is don't wait if there are other feasible options Get rid of it while you are in relatively good health and can minimise your dose Demand will exceed supply for a long time at best Screening for eligibility will be extensive and ongoing You can pretty much sell yourself to the Department of Health for one year minimum I'm cynical about government run programmes as I've done it before and it put me off for life pretty much i would only do it if imminent death was the other option To hold down a job and do it - I can't imagine how it would work. I can relate to not knowing what normal is i was shocked when i received my liver biopsy results about 10 years ago it explained my occasional completely out of the ordinary near death hangovers But looking at other 51 year old blokes around, I think I'm doing OK i get tired, sometimes bone tired, but i don't know - doesn't everyone? In a way, Hep c has 'helped' me maintain a healthier lifestyle than I would have otherwise I need to know my boundaries or I will pay an immediate as well as a long term price Just as I am currently paying the price for disrespecting my body about 30 years ago i have given little thought to treatment or doctors for 10 years But I know the time will come to pay the piper, so i am dreaming of one day being rid of this virus which i understand is slowly killing me I've been pretty verbal for the 2 days I've been here It's good to try and get one's thoughts in order, especially as I haven't expressed a thought regarding this virus in about 10 years I think this site and initiative really deserves applause it says a lot about the 'profit at all cost' state of this world that it is in danger of being taken down Bloot rant over Category: Australian PBS Listing |
29 Sep 2015 16:53 | |
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Hi I was told by a melbourne hospital not long ago, that the government would pay for treatment of patients for the first five years .After that time the pharmaceutical company would pay for ongoing patients. I was also told the level of fibrosis would not come into it that everyone would be treated. Now I dont know if this means 6000 year 1 15000 year 2 15000 year 3 etc..... adding up to 60,000 for the first 5 years. As this is the second part of the story which i have read since I was told the first part earlier this year. Who's confused ? IT Might mean you have a chance of getting it in the next 5 years but how are they going to determine who and when? Surely it will go to f4 and maybe f3 then when the now f1 and f2 wait enter the new waiting room as they become the new f3 and f4 of the future. Category: Australian PBS Listing |
30 Sep 2015 08:01 | |
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Thanks Sir Went to the GP and going for a Hep c serology blood test Once these results are back i'll get my AST/ALT's etc And then book in for a fibroscan Nervous Category: Patient Stories |
30 Sep 2015 10:55 | |
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Firstly. The drugs come in Pill form. In your case you've had prior treatment you may well have too take Riba too. I think, depending on your choice of drugs, it may be suggested you take 24 weeks treatment, I'm not sure I'll let Dr Freeman or someone else with more knowledge answer it. For genotype 1 Sofosbuvir + Ledipasvir OR Sofosbuvir + Daclatasvir +/- Ribavirin hcvsvrpredictor.liverdoc.com Category: Patient Stories |
30 Sep 2015 11:46 | |
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Thanks for that info Sirchinenge. Just to clarify, I did not have Pegylated interferon or Ribavirin. It was in the early days of Interferon treatment and I had to inject interferon twice per week. I ceased it after 6 weeks as there was no improvement. I certainly would MUCH prefer not to have Ribavirin in the mix as I remember how absolutely horrible the effects of interferon was and I've read up on the side effects of Ribavirin. The general consensus from the SVR predictor you provided is that there is a strong predictor (97%) chance of SVR with 12 weeks of Sofosbuvir + Ledipasvir without Ribavirin and 100% with it. 97% is pretty good odds and being a bit of a gambling man I'm strongly tempted to lean in that direction. I will be guided by Dr Freeman's advice though. Category: Patient Stories |
30 Sep 2015 13:47 | |
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I think it depends on the seriousness of your liver damage and possibly genotype I think i read here that the more damaged (scarred) your liver is, the harder it is for the drugs to make their way through the thicker scar tissue I'm pretty new here, but I would think (not know) that you could start at 12 and monitor your blood If at some point the results indicate that an additional 12 weeks would be beneficial, you could make the call then I've kind of got the same question and just organising bloods, fibroscans, and confirming genotype now From here, in conjunction with Dr Freeman (who I haven't spoken with yet) I will decide the course of treatment that is best And just hope that treatment is 12 weeks and doesn't include Ribavarin Good luck Category: Patient Stories |
30 Sep 2015 13:55 | |
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I had a liver biopsy 10 years ago and think I was an F3 I remember there were around 4 numbers and i was shocked to see I was 1 below cirrhosis Will a fibroscan suffice to determine treatment Or do i need to either get a new biopsy Or get the results of the 10 year old biopsy Category: Fibrosis and Cirrhosis |
30 Sep 2015 15:26 | |
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[quote="Bloot" post=483 I'm pretty new here, but I would think (not know) that you could start at 12 and monitor your blood If at some point the results indicate that an additional 12 weeks would be beneficial, you could make the call then [/quote] More reading on this site and found this from Dr freeman- seems that the decision of duration is made before starting fixhepc.com/forum/experts-corner/104-exp...-september-13th.html The advice re prolongation of treatment based on HCV viral load monitoring is incorrect. There is no relationship between on-treatment monitoring and treatment outcome (assuming high level adherence, as in clinical trials). In fact, many patients in clinical trials have had "detectable" HCV RNA at end-of-treatment and still achieve sustained viral clearance. There is clearly no relationship between week 4 (or other timepoints) and sustained viral clearance, so extending treatment duration (as we did with interferon-based treatment) does not make sense in the interferon-free era, including in the case described below. Category: Patient Stories |
30 Sep 2015 17:22 | |
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Hi Johnboy, Do you have a hep c nurse or some health worker you can contact? Side effects seem to be very individualistic. There are 3 people (myself included) on this forum who haven't had any side effects yet. I'm just about at the end of week 5. If you know Greg Jefferys blog hepatitisctreatment.homestead.com/index.html His side effects didn't kick in for several weeks. The hep nurse at Royal Hobart said some people were having side effects mostly fatigue, nausea and sleeplessness. I wish I could say more to reassure you but I don't know how concerned to be. But if you get really worried before Doc Freeman shows up here i would urge you to err on the side of caution. Category: DAA Side Effects |
30 Sep 2015 17:35 | |
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This document will help you get an idea of what treatment your doctor is likely to recommend once you have your genotype and fibroscan done. www.easl.eu/medias/cpg/HEPC-2015/Summary.pdf This was exactly what my.specialist worked from in determining my treatment given the options then available. Note that it may not render properly if you're on a tablet. It doesn't on my iPad (it used to which is weird). All the summary boxes are blacked out. They're the bits you want. It's fine on my computer. Category: Patient Stories |
30 Sep 2015 20:55 | |
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Interesting the different side effects (or lack off) people seem to experience How long has your treatment been going Berrinice I'm yet to confirm but from 10 years ago think I am G1 with level 3 scarring A big scar is also on my psyche from my previous peg interferon/ribavarin treatment Very nervous about debilitating side effects, particularly if I need Ribavirin Category: Patient Stories |
30 Sep 2015 22:06 | |
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Well I went to see my GP, a new Irish doctor only in Oz for 6 months who is not very familiar with HCV and it's management. My regular GP has retired. She was not willing to prescribe for me. She wants to get advice from my Virologist in Sydney who had already written to my GP stating that I am well educated on available and new treatments in the pipeline, that he did not need to see me again and that I could access treatment through my GP when they became available thru the PBS. So, once again it's back on the treadmill. My GP did not want to write the prescription because she thought she would be liable if I used the script to procure 'unsafe' drugs from overseas. She will await advice from my virologist which could take a month and even then it is possible he is unaware that there is a safe and effective way of accessing these meds through the buyers group. Category: Patient Stories |
30 Sep 2015 22:30 | |
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Interesting. They sound like common side effects from what I've read. I have taking drugs before that smell awful in particular Antibiotic's, am no sure about the side effects. I am starting the same treatment regime shortly I'll update in a few weeks. I hope you feel better soon and your bloods show good results. Category: DAA Side Effects |
01 Oct 2015 06:23 | |
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Greetings from the UK. I have decided to relocate my diary from the Hepc UK forum to this generics friendly forum as I'm starting my Mesochem's Dac/Hepcinat treatment tomorrow morning. I'm 41year old GT 3a F0-F1 (5.3KPA). Have been diagnosed exactly 1 year ago and since then have been doing alot of reading and research on internet. I now feel very confident to go ahead and slay the dragon. I've managed to find a hepatology consultant who has agreed to monitor my treatment. That has been the hardest part so far as UK health system is heavily apposed to drugs sourced outside the Big Pharma deals. I'm very excited and happy that the waiting game is over now and I'm finally kicking into action! Category: Patient Stories |
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